Head & Neck SCC 2 1/2 weeks post treatment

Frances_S

Hello,

My Husband is 2 1/2 weeks post treatment for H&N squamous cell carcinoma hpv+, right side of his neck stage-4, 5 lymph nodes involved, no known primary.

Treatment consisted of: 35 IMRT radiation treatment, 1 Treatment of Cisplatin, treatment had to be changed to Carboplatin and Taxol, total 3 treatments, and pain meds to control pain.

He has been receiving hydration 3 times a week, since week 3, because he was not able drink enough fluids. He was doing ok until he reached 1 1/2 weeks post treatments. Suddenly he was extremely nauseous and unable to eat or drink anything. He had blood work twice over the past weeks to test for infection, etc., NOTHING WAS FOUND. To me it seems like he is getting worse instead of better. The doctors told him he needs to take in 2000 calories a day and they don’t care if it’s just high calorie protein shakes. Of course he does not like the shakes no matter what I add to improve the taste, and he does not want a feeding tube.

 

My question is, has anybody experienced this and how long did it take until you were back on track? ANY, suggestions would be greatly appreciated.

CivilMatt

eat, drink and be merry

Frances_S,

Simply put, the doctors are correct.  He needs 2K calories using any method which works (eating, drinking, PEG, magic, Vulcan mind meld, whatever).  He also needs to physic himself up to fight.  Lack of nutrition and hydration can ruin 7 weeks at Camp H&N.

If there  is nothing wrong that they can point a finger at and he manages the food and drink, then he will start to accelerate on his recovery path quickly.

I started drinking lots  of  water before treatments started and consumed the calories one at a time, sometimes taking  all day.

By the way, in general there is (virtually) NOTHING you can do to make food  and drink more palatable.  It is just awful.

Now, onward in his recovery.

Matt

AnotherSurvivor

Yours is a fairly common

Yours is a fairly common question, not many come out the end in very good shape.  Matt is correct, any way you get any calories in counts, and moves things forward.  I got thru on enhanced chicken soup.  Wife boiled a whole chicken with some veggies in a large pot.  She drained off and saved all of the broth including the fat.  We then mixed in increasing amounts of fresh uncooked egg into microwaved hot soup, resulting in eggdrop soup.  Eventually we also started mixing in Benecals, an additive ordered via Amazon, moving the calorie needle from 60 for a cup of soup, to around 200-300. 

Three months of super broth.  Thing is I really got to like the chicken broth, now (1 year later) I cannot stand commercial broths.  From there, you just try everything.  There are very high calorie forms of the boost type drinks, lie to him and tell him he only has to drink them for a week.  Another thing to try is Whole milk.  We do the boost drinks and hate the coating effect, and blame the milk.  But I found it was actually the corn syrup, and milk actually tasted good.  I only discovered that after I got thru the crisis phase.  The best source for tons of ideas is using the search feature on this site.   For me, chicken soup for the cancer patient did the trick.  Plus a lot of time.  Recovery will take the better part of the next year.  Not what you hope for, but next Christmas will look better.

MJG1

Feeding tube?

My husband had a feeding tube placed near the end of treatments and was able to keep his weight on until after he began to eat post treament.  Then he decided to stop using it and try eating on his own.  It was awful as he struggled so much to swallow and he dumpped about 20-30 pounds in no time flat.  If I were in your shoes I would contact the Dr. and keep them abreast of his weight and caloric intake.  Without the feeding tube he's going to have to fight to get calories in so his body can begin to heal.  There are several high calorie supplements that helped my husband maintain while in treatment.  First we used Whey Protein (I found it at WalMart) and we also heated and used Benecalorie (I ordered two cases from Walgreens)  My husband and I were surprised to find him sick for about 3-4 weeks post treatment and then he finally started feeling better little by little.  He forced himself to start back to work in early Feb. 2017 and his treatment ended on Dec. 5 only about 5 weeks before returning to work.  My husband had the same number of radiation as yours and his chemo drugs were Abraxaine and Cisplatin.  He had Stage 4A, squamous cell carcinoma, right base of tongue, right tonsil, 4 lymph nodes, and half his hyoid bone.  His was HPV positive.  Best of luck to you and tell your hubby it does get much better, but he just has to eat...If he doesn't he definitely needs to give in to a feeding tube for a short time.   It's not as bad as he thinks.  We were a team and I helped make sure those calories got in.

soonermom

Calories are critical

Yes, many families have experienced what he is facing.  It is not easy.  My husband survived on VHC Boost ordered off Amazon.  540 calories in 8oz. You can drink it or put it in a tube  He did have a feeding tube until he got past the first three months post treatment.  The first two weeks post treatment were his most difficult.  No one wants a tube and they may not even give him one at this point.  He has to get calories in him bottom line.  He will not recover without nutrition.  My husband is 8 months post treatment and the muscle loss from the side effects of the nutrition struggle is a frustrating reality.  I totally agree with the advice you have been given.  The difficulty as a caregiver is you have to get him to understand and buy into the need for improving his intake.  My husband had very, very significant food aversions after treatment. It worked better for us when the professionals at the Cancer Center stressed this to him.  In the end slowly over time he did improve and I want to encourage you that now he manages his intake on his own.  Eating for him is not like before treatment but it is manageable and life is really, really good for him.  He works and travels and enjoys his hobbies again.  He has welcomed two new grandchildren since finishing treatment and traveled around the country to meet them. The "food fight" for me was one of the hardest parts of caregiving.  In the end, we can support and provide but they have to engage in the process of meeting the intake benchmarks.  Just know, most patients make it through this phase but it can be a bumpy ride.  My husband can't eat absolutely everything yet but he can eat and enjoy most/many things.  The process just does not go as quickly as we all want...I said for him it seemed to move at the speed of a glacier pre global warming.  I tried to get him to focus on what was working better than a week or a month ago not yesterday.  stay strong and hang in there, it will get better.  

OKCnative

47 year old male here with

47 year old male here with HPV+ SCC BOT Stage 3. I did the 35 rads and 3 large doses of chemo. I also refused a feeding tube.

For many people, they actually feel worse (temporarily) once treatment ends. I know I did. The first few weeks (1-7) I felt as bad or worse than during the whole of treatment. Then, literally overnight it got better. I personally needed help convincing myself to eat solid foods again. I was afraid it would hurt and/or I would choke. I signed up for a swallow study. It was great. I could literally see the food going down as I swallowed and they showed me exactly where it was getting caught up and where it was hurting. They also showed me how to get the food down without it getting caught. They had me even eat a dry granola bar in front of them and the x-ray machine to prove to myself I could eat whatever I wanted. Worked like a charm. I went out that night and had Mexican food. I wouldn't have dared try it the day before.


During treatment (starting about week 5) and after (for maybe 1.5 months) I was on liquids only. We tried to be all 'healthy' and yummy and bought a VitaMix and planned to make delicious and nutritious meals for me to drink. We quickly realized that to get in enough calories, yummy and nutritious meant each meal was 30-60 ounces of liquid (times 4 meals a day)! That's a lot when about the most a person can swallow is 1 ounce per gulp. So, I gave that up an went to the Extra High Calorie Boost. It's only 8 ounces and has 530 calories. I did 4 of those a day at only 8 swallows per meal. It only comes in vanilla and we had to order it on Amazon. It doesn't taste very good, but it goes down fast!

When I was feeling better I'd drink Premiere Protein from Sam's Club or WalMart. It takes more to get the calories, but it has more protein (critical to healing) and comes in several flavors (love banana and caramel - vanilla is okay - chocolate was not good).

I stopped looking at nourishment as enjoyable or social. It became simply a necessity and a 'job.' Get through it because it's temporary and vital to your recovery.

I still lost 30+ pounds (but I also intentionally put on extra weight prior to treatment).

3 months post treatment and my weight is back to normal and I can eat anything I want.

Good luck!

Frances_S

CivilMatt said:

eat, drink and be merry

Frances_S,

Simply put, the doctors are correct.  He needs 2K calories using any method which works (eating, drinking, PEG, magic, Vulcan mind meld, whatever).  He also needs to physic himself up to fight.  Lack of nutrition and hydration can ruin 7 weeks at Camp H&N.

If there  is nothing wrong that they can point a finger at and he manages the food and drink, then he will start to accelerate on his recovery path quickly.

I started drinking lots  of  water before treatments started and consumed the calories one at a time, sometimes taking  all day.

By the way, in general there is (virtually) NOTHING you can do to make food  and drink more palatable.  It is just awful.

Now, onward in his recovery.

Matt

Thank you for the advise

Hi Matt,

 

Thank you for the advise. Monday will be 3 weeks. He is trying a little harder. Tonight I discovered his hesitation to eat was because he feels as if soft foods are getting stuck in his throat, it was not due to pain. My thoughts are, this is probably due to the damage from the radiation.

I think it is going to take him some getting use to the new normal.

Frances

Frances_S

OKCnative said:

47 year old male here with

47 year old male here with HPV+ SCC BOT Stage 3. I did the 35 rads and 3 large doses of chemo. I also refused a feeding tube.

For many people, they actually feel worse (temporarily) once treatment ends. I know I did. The first few weeks (1-7) I felt as bad or worse than during the whole of treatment. Then, literally overnight it got better. I personally needed help convincing myself to eat solid foods again. I was afraid it would hurt and/or I would choke. I signed up for a swallow study. It was great. I could literally see the food going down as I swallowed and they showed me exactly where it was getting caught up and where it was hurting. They also showed me how to get the food down without it getting caught. They had me even eat a dry granola bar in front of them and the x-ray machine to prove to myself I could eat whatever I wanted. Worked like a charm. I went out that night and had Mexican food. I wouldn't have dared try it the day before.


During treatment (starting about week 5) and after (for maybe 1.5 months) I was on liquids only. We tried to be all 'healthy' and yummy and bought a VitaMix and planned to make delicious and nutritious meals for me to drink. We quickly realized that to get in enough calories, yummy and nutritious meant each meal was 30-60 ounces of liquid (times 4 meals a day)! That's a lot when about the most a person can swallow is 1 ounce per gulp. So, I gave that up an went to the Extra High Calorie Boost. It's only 8 ounces and has 530 calories. I did 4 of those a day at only 8 swallows per meal. It only comes in vanilla and we had to order it on Amazon. It doesn't taste very good, but it goes down fast!

When I was feeling better I'd drink Premiere Protein from Sam's Club or WalMart. It takes more to get the calories, but it has more protein (critical to healing) and comes in several flavors (love banana and caramel - vanilla is okay - chocolate was not good).

I stopped looking at nourishment as enjoyable or social. It became simply a necessity and a 'job.' Get through it because it's temporary and vital to your recovery.

I still lost 30+ pounds (but I also intentionally put on extra weight prior to treatment).

3 months post treatment and my weight is back to normal and I can eat anything I want.

Good luck!

This was all so good to read.

This was all so good to read. It's almost three weeks post treatment and exactly what you have described, is what he is going through. Are you 3 months Post treatment?

I am going to show my husband your post and the others. I believe it will be helpful for him to read these post. Right now I think he feels very alone.

Many thanks!

rsp

Hang in there!

Hi Frances,

My husband sounds a lot like yours.  He finished his treatment one year ago, and he is just finally starting to get back to "himself" after a LONG year.  He did not have a feeding tube and ended up 90 pounds lighter.  He struggled for many many months to eat anything, and is just now saying his taste is about 20%.  The dr. told him he is one of the SLOWER healers, but it is not unusual, as everyone's progress is different. 

For the last year, I have been visiting this site daily, and it has helped me tremendously.  My husband never wanted to look on here, but I would share with him everything I learned.  As several people above mentioned, Benecal and High Calorie Boost (560 calories) were life savers for my husband. We purchased both on Amazon, and my husband drank the High Calorie Boost for the entire year.  Benecal is a small cup of liquid that can be added to almost anything, adding an extra 360 calories to whatever you put it in.

My husband lost most of his muscle mass and is still struggling to get it back.  He takes it day by day and tells me he is finally starting to get his energy back.

So, please tell your husband not to give up; this journey is different for each person. 

I found being a caregiver very challenging and stressful at times, but getting on this site gave me so much hope.  The people are wonderful and are so good at sharing information that will help your husband (and you).

Best of luck to both of you.

Renae 

OKCnative

Frances_S said:

This was all so good to read.

This was all so good to read. It's almost three weeks post treatment and exactly what you have described, is what he is going through. Are you 3 months Post treatment?

I am going to show my husband your post and the others. I believe it will be helpful for him to read these post. Right now I think he feels very alone.

Many thanks!

Yes, I was 3 months post

Yes, I was 3 months post treatment last week - did my post treatment PET Scan.

Another thing that worked for me while eating was to follow each bite with a drink of whole milk. I was never much of a milk drinker but that tip helped a lot. Plus, it added calories to my meal.

I never thought I'd be eating over the Christmas holiday, but I ate anything I wanted.

The keys to a good recovery were pretty straight forward; positive attitude (this is all temporary), consume your calories, consume extra protein (even liquid protein counts), drink lots of water and move around even when you don't feel ike it.

My docs said I recovered much faster than 90% of their patients and they too credited the list above.

MikefromWinthrop

Hello, I am currently 6 week

Hello, I am currently 6 week post treatment for squamous cell, primary on back of tongue, 1 lymph node involved. Amazing, I can taste evrything!!! Saliva is not as good, but not dry, currently eating 2 meals a day, plus 3 1000 calorie shakes, it works. I add a cup of vanilla ice cream to every shake. dealing with thush now, of all things, after this horrible torture of a treatment, also off all pain meds. Still have a peg tube, unused for over 3 weeks, doc doesn't want it out yet, what are my rights to demand it out?

Frances_S

OKCnative said:

Yes, I was 3 months post

Yes, I was 3 months post treatment last week - did my post treatment PET Scan.

Another thing that worked for me while eating was to follow each bite with a drink of whole milk. I was never much of a milk drinker but that tip helped a lot. Plus, it added calories to my meal.

I never thought I'd be eating over the Christmas holiday, but I ate anything I wanted.

The keys to a good recovery were pretty straight forward; positive attitude (this is all temporary), consume your calories, consume extra protein (even liquid protein counts), drink lots of water and move around even when you don't feel ike it.

My docs said I recovered much faster than 90% of their patients and they too credited the list above.

Swallowing Therapist

We are going to see a swallowing therapist on Friday. I do believe it is a combination of swallowing his food and depression. I also think the pain meds are adding to the nauseous feeling. We have started to wean him off some of the pain meds, but it is a slow process.

Thank you for all the suggestions. I plan on reading him all the post tomorrow. I know he feels very alone.

Frances_S

rsp said:

Hang in there!

Hi Frances,

My husband sounds a lot like yours.  He finished his treatment one year ago, and he is just finally starting to get back to "himself" after a LONG year.  He did not have a feeding tube and ended up 90 pounds lighter.  He struggled for many many months to eat anything, and is just now saying his taste is about 20%.  The dr. told him he is one of the SLOWER healers, but it is not unusual, as everyone's progress is different. 

For the last year, I have been visiting this site daily, and it has helped me tremendously.  My husband never wanted to look on here, but I would share with him everything I learned.  As several people above mentioned, Benecal and High Calorie Boost (560 calories) were life savers for my husband. We purchased both on Amazon, and my husband drank the High Calorie Boost for the entire year.  Benecal is a small cup of liquid that can be added to almost anything, adding an extra 360 calories to whatever you put it in.

My husband lost most of his muscle mass and is still struggling to get it back.  He takes it day by day and tells me he is finally starting to get his energy back.

So, please tell your husband not to give up; this journey is different for each person. 

I found being a caregiver very challenging and stressful at times, but getting on this site gave me so much hope.  The people are wonderful and are so good at sharing information that will help your husband (and you).

Best of luck to both of you.

Renae 

Hi Renae,

Hi Renae,

This has been a very difficult at 3 ½ weeks post treatment, I can’t imagine a full year. My husband is 62 and has endured 35 years of physical labor in construction, he was always fit and very energetic. Over the past 10 weeks he has withered away to nothing. There are days I am so angry over the “cure” which is nothing short of cruel and barbaric. I know everyone is different, but I do hope after meeting with a swallowing therapist on Friday he is able to take in more calories. Right now, he is taking in approximately 1000-1200 calories. That is not enough for a man of 6’ 3” tall. When I changed his pain patch today I felt as if I was applying it to a very frail persons arm. This is just so sad.

Thank you,

Frances

Frances_S

MikefromWinthrop said:

Hello, I am currently 6 week

Hello, I am currently 6 week post treatment for squamous cell, primary on back of tongue, 1 lymph node involved. Amazing, I can taste evrything!!! Saliva is not as good, but not dry, currently eating 2 meals a day, plus 3 1000 calorie shakes, it works. I add a cup of vanilla ice cream to every shake. dealing with thush now, of all things, after this horrible torture of a treatment, also off all pain meds. Still have a peg tube, unused for over 3 weeks, doc doesn't want it out yet, what are my rights to demand it out?

Thrush is Common

Hi Mike,

Thrush is very common. The good news is it clears up fast. I am happy to hear you are doing well. I am sure your doctor will remove the peg in time, once he is sure you don’t need it. Give it a little more time.

 

Have a Happy Healthy New Year and Stay positive.

Frances

OKCnative

Frances_S said:

Swallowing Therapist

We are going to see a swallowing therapist on Friday. I do believe it is a combination of swallowing his food and depression. I also think the pain meds are adding to the nauseous feeling. We have started to wean him off some of the pain meds, but it is a slow process.

Thank you for all the suggestions. I plan on reading him all the post tomorrow. I know he feels very alone.

How did the swallow test go?

How did the swallow test go?

I'm now 4 months post treatment and I'm literally almost back to 100%. I suffer from loss of saliva (not gone, but noticeably less), but everything else is back to before treatment. Remind your husband this doesn't have to last forever!

christine2080

MikefromWinthrop said:

Hello, I am currently 6 week

Hello, I am currently 6 week post treatment for squamous cell, primary on back of tongue, 1 lymph node involved. Amazing, I can taste evrything!!! Saliva is not as good, but not dry, currently eating 2 meals a day, plus 3 1000 calorie shakes, it works. I add a cup of vanilla ice cream to every shake. dealing with thush now, of all things, after this horrible torture of a treatment, also off all pain meds. Still have a peg tube, unused for over 3 weeks, doc doesn't want it out yet, what are my rights to demand it out?

Thrush

Our acupuncturist told my husband to avoid dairy as it feeds Thrush. He quit dairy & subbed aloe Vera juice & the Thrush cleared up. He also got a prescription for it.

Curlyn

Hi Frances, have they looked

Hi Frances, have they looked in your husband's throat to see how swollen it was? My throat was literally too swollen to let food into the esophagus without aspirating. So I relented and got a nasogastric tube (through nose) for about 3 weeks. If your husband doesn't get those precious calories in, he simply won't heal enough to feel better. You do what's necessary for the short term so you can get back into your life. Lots of good suggestions on this board. Everyone is different but nutrition is a constant, so is ruling out other cause. Tell the Team so they can help you. Good luck! (PS. This is a few weeks old, how is he doing now?)

Frances_S

Curlyn said:

Hi Frances, have they looked

Hi Frances, have they looked in your husband's throat to see how swollen it was? My throat was literally too swollen to let food into the esophagus without aspirating. So I relented and got a nasogastric tube (through nose) for about 3 weeks. If your husband doesn't get those precious calories in, he simply won't heal enough to feel better. You do what's necessary for the short term so you can get back into your life. Lots of good suggestions on this board. Everyone is different but nutrition is a constant, so is ruling out other cause. Tell the Team so they can help you. Good luck! (PS. This is a few weeks old, how is he doing now?)

Now 6 weeks post treatment

Hi Curlyn,

Thank you for asking. It is now 6 weeks 1 day post treatment and he is doing wonderful.  We did go to see a swallowing therapist at 4 weeks post treatment. She did not find any problems with his swallowing. Thank God! She felt he developed a fear of choking and she recomended weaning him off of the pain meds. She also gave him some swallowing excercizes to do. When he was fully weaned off of the pain meds by 5 1/2 weeks, he really started to improve. He was no longer nauseous and little by little started to eat.

Today was a great day. He ate two sunny side up eggs on toast. The toast surprised me. He also had pasta and a eggplant rollatini for lunch, and chicken, broccoli and noodles with gravy for dinner, he even snacked on cookies. His mouth still feels dry, but he has some of his taste back. He learned from the swallowing therapist how to deal with the dryness. 

How are you doing?

Frances_S

OKCnative said:

How did the swallow test go?

How did the swallow test go?

I'm now 4 months post treatment and I'm literally almost back to 100%. I suffer from loss of saliva (not gone, but noticeably less), but everything else is back to before treatment. Remind your husband this doesn't have to last forever!

Swallowing Therapist

Today is 6 weeks 1-day post treatment and it was a great day! Thank God for the swallowing therapist and you sharing your experience. My husband was almost 4 weeks post when we went to see the swallowing therapist. She was wonderful. She showed him that he can swallow. She discovered he developed a fear of choking, because he to felt the food was getting stuck. She showed him how do a hard swallow instead of hacking it up. She also gave him swallowing exercises to do. She showed him that he can swallow water without stopping in-between sips. She also recommended weaning off of the pain meds if he could. As soon as he was off all the pain Meds at 5 1/2 weeks post treatment, he slowly started to improve. Today was a wonderful day! He had 2 sunny side up eggs on toast for breakfast. Pasta and eggplant rollatini for lunch. Chicken, broccoli and noodles with gravy for dinner. Cookie's for a snack. OMG! I am sooo, so happy.  He too has less saliva than before, but can taste most foods.

 

Monday, we went back to MSK and my husband drove for the first time in months, his blood work was normal, and no more hydration. They scheduled his PET scan on Thursday, March 1st. I'm certain we will both be a mess that weekend because he won't get the results until Tuesday, March 6th.

Thanks for reaching out. 

 

Peneloppe

Hi, my husband was unable to

Hi, my husband was unable to eat or drink for quite some time, ended up hospitalised because of it.  He had a peg tube but reflux was a major problem and even that did not work.

he was gagging continuously, only when he started being able to hydrate himself did the problem got manageable and gradually the mucous were not as bad.  Let him try to drink water as much as he can.

 

good luck

Racerxdb

Try Miracle fruit

Have you tried Miracle fruit? it great for making thing taste better after you eat one. Lemons taste like they have sugar on them for instance.

Also try CBD oil, Its miraculous for  its healing and anti inflammitory properties. Its healing me up super fast!